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:) Hi john.
Well, just to warn you I think that living with crohn's is a ongoing learning experience! My doctor thinks that large life changes bring on my attacts. It started when I graduated from high school ( I was in the hosp for 2 1/2 weeks) that was my diagnosis. It was so bad that I was unable to have any of the procedures to determine were the Chron's was located and I was down to about 115 lbs. After that I did not eat any meat,pasta or heavy foods for 4 years and just recently added it back in. No red meat though, I tried.. no steaks for this girl!: WHen I graduated from college I had my second massive wieght loss and flareup and it wasn't easy to stop this time. I have been struggling ever since. I added alot more asocol, more 6MP, and Remicade treatments. You should ask about those if they will help because if my insurance covered more or I made more money I would get them because it is a miracle!! It attacks the
flare up from the inside out so it is more effective. New and very expensive so my pocket book doesn't allow me to have them but with good insurance they are covered. But I have also from that point been trying to start my career and get settled in my adult life so again.. life changes. Stress defenitly plays a part. SO I would say now I have been having mild to strong flare ups about once a month for 2-3 days. It definately is hard to live with sometime and especially with the most affected being so young. I wish that I would have had someone to talk to about it when I was diagnosed so if you want to keep chating I'm hear. I'll let you know the name of that medicine tommorrow.
:) Jennifer
"Long, John" <jlong@...> wrote:
"Long, John" <jlong@...> wrote:
Thanks so much Jennifer. It was really nice to hear from you. Everything happened in October 2003. He spent a total of 23 days in two different hospitals that month. On the tests they did on him they came back showing something like 92% likely for Chohns, 6% UC, and 2% other. His ped. GI doctor said that it was really too early to determine which one it was, and said that the treatment is basically the same. Later they would have more of a diagnosis than just IBD. He had inflammation of the esophagus (sp?) and in the colon. He got it under control with the prednisone about 8 months ago.He's been having a teacher come to the house 5 days a week now, since he can't make it through the day at school. He hasn't had a flare up in a while (blood tests show no more inflammation). He goes to see a pediatric neurosurgeon next month because of something that also showed up in his recent MRI. Back pain has also been an issue for him this year.
How often do you get a flare-up Jennifer? Yes, I would like to know the name of the stuff from Wal-Mart you take.Thanks Again,John-----Original Message-----
From: Jennifer Rathje [mailto:jenn_rathje@...]
Sent: Thursday, January 13, 2005 9:37 AM
To: crohns_n_colitis@yahoogroups.com
Subject: RE: [crohns_n_colitis] My SonJohn,Hi my name is Jennifer and I have had Chron's for about 6 years. It is definately hard to figure out what to eliminate and I know it can be very fusterating. So I feel your pain. My parents have been at a loss since I was diagnosed and sometimes find it hard to understand. I have noticed that when I don't eat close to when I go to bed I don't have those pains at night. Usually that means not past 7pm. The is a gas relief drug at walmart I can't think of the name but it is a small white bottle with a yello lid and a blue label. I'll get you the name tommorrow, and that really helps with the pain. It used to be a perscription so it works fast and they have a mint taste so your son won't mind them! It really helps me when I have a bad attack and can't sleep. Also, I think it is easiest and less painful if you cut out the things that are hard to digest, life red meat and the like. then after things are under control re introduce them if you feel like you can. How long has he had it? Sometimes your body also gets used to the Asocol and you have to up your dosage to stop the flare ups. (that happened to me) Hope that helps a bit. Good luck!
"Long, John" <jlong@...> wrote:I sure wish we could figure out what in his diet to eliminate. Last night he simply had chicken noodle soup, with crackers. We'll just have to keep trying. It's really tough seeing your kid in pain, as you probably already know.
Thanks....John-----Original Message-----
From: Len Blaifeder [mailto:thelenshow@...]
Sent: Wednesday, January 12, 2005 9:43 AM
To: crohns_n_colitis@yahoogroups.com
Subject: Re: [crohns_n_colitis] My Sonhello john...i'm len...new to the group.my 11 year old zachary was recently diagnosed with colitis.he is on azacol as well.thankfully flare ups are minor.just a word of experience.we are always mindful of what zach eats at night and try to be congizant of what causes the flare-ups.for him, its saucy foods.perhaps it is diet related for your son as well.good luck
John <jlong@...> wrote:
Hey everyone. I have a question. My son Adam (12) has been hurting
real bad in his stomach again. This pain is always worse at night.
He's not having a flare up, thank God, but the pain is extremely
intense. My wife even called his ped. GI Doc last night (2:00 am),
just to see if there's anything else to do.
He's already scheduled for another colonoscopy, and the upper GI
soon. They are also going to be doing more blood work this week. He
takes his Asacol twice a day, and Bentyl at night. My question is,
does anyone here experience real bad pain just at night?
Thanks,
John
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